In light of Disability History Month, Comment Writers and Editors come together to shine light on their hidden illnesses, sharing their experiences and realities
What is Disability History Month?
Disability History Month runs from the 18th November until the 18th December in the UK, with the aim of celebrating the lives of disabled people both in the past and present. This year marks the twelfth year of Disability History Month, and one of the themes for this is ‘Disability and Hidden Impairments’.
Often, many of us will suffer in silence with our conditions – they are not taken seriously as they cannot be seen. Existing in the margins of not being ‘unwell enough’ to be disabled, but not ‘well enough’ to fit inside societal perceptions of ‘normal’, can be incredibly isolating. These hidden illnesses can have profound impacts on the daily life of its sufferer, and they should not be left to cope with this alone. Whether it is a matter of finding more suitable treatment plans and cures, or educating others of the signs and symptoms of these conditions, this month highlights the importance of awareness of these conditions.
With this in mind, we have invited our writers to share their experiences with their conditions that can often go unseen on the surface. Our writers have bravely provided an insight into what it is like to live with conditions that exist beyond the surface. Exploring a range of issues – from mental health, to autoimmune conditions – comment writers come together to discuss the impact their health has on their daily life.
Phoebe Snedker, Comment Editor
Hypermobility – Ehlers Danlos Syndrome
“Most patients live a normal life with this chronic illness”, I was told at the age of thirteen. And for the most part, I have been able to do what I can and want to do with H-EDS (Hypermobility- Ehlers Danlos Syndrome), which for me mainly causes joint/muscle pains and strong fatigue.
I have been able to do physical activities I want to do (like rock climbing, DofE, parades within the RAFAC) but I struggle. Sometimes the reason I do not feel up to doing something or going out is not that obvious, but I’m just so tired- I eventually end up forcing myself to do it anyway out of FOMO and self-doubt. I think that’s why it’s called a ‘hidden’ illness- if I pretend I’m not struggling, you probably would not know the difference. Most of the people around me, if not all of them, know about my condition- probably because I talk about it constantly. I cannot help it most of the time; for me, it’s constant, like making a comment on the weather or an outfit, it’s just something that exists at that moment. Even if it’s only a small amount of discomfort or if I’m only a little bit tired that day, it’s still there, in the background.
Sometimes I feel like a burden, consistently chatting about something that affects my everyday life. My pain and fatigue are relatively mild compared to a lot of other people that have EDS- I’ll be scrolling through the hashtag on Instagram and seeing how much others struggle, and I’ll think “I do not deserve to complain when so many people have it worse than I do.” It’s a mindset I struggle with, and I assume many other people do. In reality, it affects me more than 90% of the time, no matter where I am on the pain scale. It essentially rules my life, but I realise that throughout this article, I have been referring to my condition as “it”, rather than saying “my chronic illness”, or “my EDS”. I try to play it off as just some small thing when really, it’s my life, and I should acknowledge it.
What I have is manageable, and I think that because it’s not visible, and because I haven’t had to go back to the doctors for it since I was diagnosed five years ago, I doubt myself, I feel like an imposter. I think to myself, “I shouldn’t have said that and they will probably find it annoying”, or “It’s not that bad, I can force myself to go to different activities that will probably make me feel worse the next day”. I’m still working on my mindset, and the knowledge of my physical and mental limits, and hopefully, maybe after another five years, it’ll get better; or I’ll just learn to accept it.
Mia Lynam, Comment Writer
Endometriosis is a condition that affects 1 in 10 people assigned female at birth – yet the majority of us have never heard of it. I was initially diagnosed via laparoscopic surgery at age 18, though I had been to multiple doctors – who often did not take me seriously – before this about my symptoms, which began at age 13.
I am currently in a medically induced menopause as a result of my condition. Since being diagnosed 2 years ago, endometriosis has returned to my ovaries and pelvic area, and has spread to my bladder – resulting in chronic pain, bladder and urinary problems, and a lot of daily medications. Hospital waiting lists for surgery are insufferably long, which means that, like many other sufferers, I am unable to access the healthcare I need to ease my pain. I am awaiting further laparoscopic and cystoscopy surgery, but without the financial ability to fund this privately, it is unclear how long this wait will be. This uncertainty inevitably puts a strain on your mental health – you have no other option than to deal with it, essentially.
Endometriosis impacts all aspects of my life: my work life, social life, my education, my mental health, my relationships and sex life, and my relationship with myself. The constant bloating – nicknamed ‘endo belly’ – has caused me a lot of confidence problems growing up, as my bulging stomach does not quite match the beauty standards held in our society. My relationship with my body-image is still one that is healing now, but I thoroughly believe more awareness and recognition of the condition and its symptoms would have made a world of difference in how I viewed myself.
There is no cure for endometriosis, and so it is a part of my body that I am trying to accept and nurture. The intense pain, unpredictability and fatigue associated with the disease often leaves me unable to be as productive or social as I would like, which is deeply frustrating for a perfectionist like myself. The Reasonable Adjustment Plans (RAP’s) implemented by the University have been a saving grace when I suffer with flare ups, but the inability to function or maintain normality as-and-when you wish is a tough reality to accept. Navigating my life and responsibilities around the condition is most certainly still a work in progress, though I find comfort in knowing that my openness about the condition and acceptance of my body is something my younger-self would be proud of.
Phoebe Snedker, Comment Editor
Dyspraxia is a common disorder affecting fine and/or gross motor coordination in children and adults. Dyspraxia affects a large amount of people with an estimated 5% of the population having dyspraxic traits. Unfortunately, Dyspraxia is not a disability that is widely known about.
I personally was formally diagnosed when I was 18 years old, despite the fact that my mom had been suggesting since I was small that I was Dyspraxic. For me, I find things that neurotypical people find easy fairly difficult due to my disability.
I struggle with my hand-eye coordination massively and as a result find dancing and sports difficult. It took me many years to learn to catch and throw and even now it is something that requires immense concentration for me. I have poorly established hand dominance and find it easier to use each hand for different tasks, although if I had to pick a dominant hand, I would most likely suggest my right hand.
I also have trouble with tasks that require fine motor skills, such as handwriting. I actually find that handwriting physically hurts and as a result I can only write small amounts before I have to take a break. As a result of this I type everything on a computer, including my exams.
I struggle with speech and language sometimes. Common issues I have are to do with pitch and volume. I often speak too loud without realising or meaning to, especially if I am excited about a topic or feel that I am being ignored. I also struggle with interrupting for similar reasons. My pitch has gotten me into trouble on several occasions when I have used a blunt or sarcastic tone when speaking to people without meaning to.
I have always struggled with tasks that many others learnt to do when they were children. For example, I cannot tell the time on a clock, even now as a 23 year old woman. I also have never been able to read a map.
Having Dyspraxia, however, is not all about the things I cannot do and I would not want to paint the idea that I struggle with everything. It may take me longer to learn things but when I have learnt something I never forget how to do it, no matter how long it has been since the last time I did it. Having Dyspraxia has given me a chance to care deeply about things. It has also shown me that just because things are hard does not mean you should give up. Being a Dyspraxic individual has made me who I am today, a dedicated, hardworking, persistent and caring woman.
Charis Gambon, Comment Writer
My experience with Coeliac Disease is something that I often struggle to speak about, but I always want to share in the hopes that it can help just one person feel less alone in the experience. Because, for me, it has been at times incredibly isolating. From restricted spontaneity surrounding social situations to a general lack of understanding of the condition, Coeliac Disease quietly restricts your day-to-day life in ways that people cannot see. For context, Coeliac Disease is an auto-immune disease that impacts the small intestine. The immune system attacks its own tissues when gluten is eaten, resulting in damage to the small intestine meaning nutrients cannot be absorbed.
I was diagnosed when I was seventeen after almost two years of stomach aches, bloating, sickness, bowel issues, migraines, blurred vision and joint swelling and aches. This diagnosis was a result of an extensive process of being dismissed as ‘probably struggling with IBS’, countless blood tests and an intrusive endoscopy and biopsy procedure to declare the damage to my gut sufficient enough to warrant an official Coeliac diagnosis. There is no cure for Coeliac Disease, only management through a strict gluten-free diet. Although that diet has massively improved my symptoms, I still struggle day to day with the exhaustion and bloating; having to rearrange plans and re-consider outfits to ensure I am comfortable.
It brought an entirely new level of anxiety surrounding eating out for me. I already felt strange enough asking for a specific menu, never mind the various restaurants that claim they cannot offer gluten-free options as it would not be ‘authentic’ to the cuisine. I felt alienated and as if I could not trust anyone, and very quickly just wanted to isolate myself. This took me a while to find my feet with and is something that still brings a lot of anxiety surrounding plans – Coeliac UK’s accredited venues were, and still are, a lifesaver. I have faced all sorts of misconceptions about my illness. The most popular is always that I am just being a picky eater, or that the gluten-free diet is something I have picked as a kind of fad diet. Oftentimes people will tell me that I look completely fine so I cannot be ill. Yet every single day, I deal with some kind of a physical or mental strain and exhaustion brought on by an illness that I will live with forever.
It very quickly does just become a normal way of life, but this has only happened through a strong support system, the time it has taken me (and is still taking me) to come to terms with my illness, and a wider awareness of just what it means to live with Coeliac Disease. My story and experience with the chronic illness is one that will never fully be complete – this is an illness that I will be grappling with for the rest of my life after all.
Samantha Andrews, Music Editor
Depression and Anxiety
When I was first diagnosed with anxiety and depression, I didn’t tell anyone. I didn’t tell anyone because of the environment I grew up in. In the environment I grew up in, we did not talk about mental health, and I knew no one who had a mental illness. I also didn’t learn about it in school or see it on social media.
Every day we are asked several times “How are you”, and most of the time we do not answer honestly. When I am asked, “How are you” I usually answer “I’m fine”
But this is not the truth. I lie about how I feel. I lie because I do not want to bother my friends and family about my feelings. And I lie because I am afraid of how they will see and treat me differently.
It has not been easy to be alone with these feelings. It became more difficult to go to school and to activities. It became more difficult to be social and be around others.
I had tried everything to get better without help from my friends and family. I tried to sleep better, eat better and exercise more. I even went to therapy once a week. But nothing made it better.
I became so tired and lonely. And I realized I could not go on like that. But there was one thing I had not tried. That was to be honest, to tell my friends and family that I was not fine.
Therefore, I decided that next time someone would ask me about “How are you” I would answer honestly.
After I opened up to someone about having a mental illness, it became easier and easier to tell more people. And it got better.
I finally was not alone with my feelings, and had people who knew about it and supported me. It became easier to go to school and participate in activities. It became easier to be social. And I became less tired and lonely.
I have learned that if those around me do not know about my mental illness, then they do not know who I really am.
Dina Tjelmeland Adeler, Comment Writer
Endometriosis and PCOS
Many people don’t actually know a lot about PCOS or Endometriosis. I have had the pleasure of learning about them across the last five years. Although distinctly different, both of these conditions affect my everyday life, they cause (and are not limited to): bloating, painful periods, pelvic pain, chronic fatigue, low energy, weight gain, anxiety and low moods (or sometimes depression). I experience all of these symptoms and more, it can be comforting to know that there is a medical reason for the physical and mental abnormalities I have always been self-conscious about.
Currently there is no cure for endometriosis or PCOS. You can find ways to manage the symptoms, but these are only short term. I end up in a lot of pain, which can stop a lot of my everyday activity (including university work). Both of these conditions make it hard for me to plan to see friends, my activities for the day depend on what I feel physically and mentally capable of (for example, I can’t plan when I have a flare up or when I am feeling constantly tired or down). Unfortunately, this means I have to put myself first and focus on learning to cope with these conditions. My friends and family are all very supportive of this, they understand that I don’t always feel up to going out.
There is emotional as well as physical pain when being diagnosed with endometriosis and PCOS. It’s been difficult at times to come to terms with, I have confidence issues with my bloating, weight, fatigue and low moods. But these are all things I have little to no control over. Social media really doesn’t help with this.
On social media, you often just see the best of everyone’s lives, it is just a snippet and never the full picture. Over the past few months I significantly reduced the amount of time I spend on social media and my phone, this has had a positive effect on my mental health and I have been respecting my limits, realising that I cannot be constantly on the go as this causes me extra stress that I am told to reduce. The toll all of this takes on me may not always be understood by everyone – it impacts my social life, my mental and physical health and my appearance. But I am in the lucky position of having support from family, my partner and my friends.
A person’s illness may not always be visible, but you never know what someone is going through. There is still a lack of awareness for both endometriosis and PCOS, but even though this scared me at first, it is always comforting to know that I am not the only one with these conditions. I am just dealing with them in the way that suits me.
Aimee Sargeant, Music Editor
My experience with anxiety is not something I speak of often; this is partly because I do not want to burden or worry those around me. Ironically, one of the key signs of anxiety disorder is persistent worrying. I often struggle with letting things go and fear making the wrong choices in pretty much every aspect of my life.
For me, anxiety takes multiple forms, however, the most prominent factors for me are struggling in social situations and often experiencing overwhelming feelings of self-doubt. I always used to characterise my discomfort around large or new groups of people as simply being down to my shyness, but it was only as I got older that I realised that it was down to anxiety. I would say that almost every time I know that I am going somewhere with large groups of people I feel a huge sense of dread and a heavy feeling in my chest. I constantly expect the worst and worry that I will embarrass myself or that people will judge me, and then I find myself second-guessing everything I do and say, identifying flaws in my interactions. Most of the time I know my limits and try not to push myself too hard, other times my anxiety gets the better of me and I suddenly have to take myself away from the situation to prevent a panic attack.
Another common symptom of anxiety is intense feelings of imposter syndrome, something that became even more apparent to me when starting university. Although this in itself is not a medical problem, for me it leads to continuous patterns of thinking that lead to self-doubt and negative thoughts about myself. When it comes to how I deal with this, it falls at two extremes: I either find myself unable to work altogether out of the dread of the outcome or I overwork myself to the point of exhaustion when evaluating my sense of self-worth through my education. I find it almost impossible to praise myself for success as I feel unable to believe in my abilities.
Although I can comfortably say now that I have learnt to manage my anxiety, it is still very much something that will always be a part of my life. Sometimes we just have to be kind to ourselves and understand that things cannot always be as we had hoped. Personally, I do my best in listening to my own needs and try to manage my anxiety one step at a time.
Ffion Hâf, Comment Editor
Chronic Fatigue Syndrome
Once, when speaking to a room full of people without disabilities, I described having a hidden disability as a ‘terrible privilege’ – the fact is, for someone with social anxiety like mine, being able to choose whether people can or cannot see my disability is a blessing and a curse.
I have CFS/ME, which leads to me being a part-time mobility aid user (for me, my mobility aid is a funky stick with bright polka-dots). Generally, I only use it on ‘bad’ days, but that is a bit of a misnomer – my days are rarely ‘good’ or ‘bad,’ existing instead on a spectrum. CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) comes with something called ‘post-exertional malaise’ which is effectively a medical term for extreme crashes of energy following a period of ‘exertion.’ The amount of ‘exertion’ necessary to cause a crash varies broadly between people and even for me personally throughout the days and weeks. Sometimes, I can do a full day of uni work without crashing, sometimes I can barely eat a bowl of cereal.
I remember, once, trying desperately to eat some soup during one of my worst days, and being unable to because the effort of lifting the spoon was causing my arms to shake so much there was never any soup left by the time it got to my mouth. There is no use feeling sorry for me, even at the time I was laughing at myself. The thing is, unless I am physically falling over in the street (it has happened), or using my mobility aid, no one knows that I am struggling, and this can make it very hard to ask for help if I need it.
If you are sitting in one of the disabled seats on the bus, you are not going to be very inclined to offer it to a random healthy-looking twenty year old. On the other hand, when I am using my mobility aid, I get stared at, pitied, patronised, and sometimes approached by complete strangers. This makes me incredibly uncomfortable. It is a choice I have to make everyday, when I look at my stick propped up next to the radiator, and it is ridiculous how little my actual health will usually factor into my decision. Another difficulty is that, due to the post-exertional malaise, my stick is also a preventative item – it lessens the exertion, and therefore the crash. It is a case of weighing up the pros and cons, but it is my choice – not a happy one – but a level of agency I am deeply grateful for nonetheless.
Charlie Knight, Comment Writer
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